Just newly finding out my son has a Brachial Plexus injury. Looking for answers, help and support. Please share you story and child's progress.
My son has a mild form of Brachial Plexus injury/Erb's Palsy. Not noticed or noticeable at birth. I discovered it on my own when he was about 4-5 months. No word from delivering doctor that anything could have gone wrong during delivery...but then again that wouldn't get mentioned to me, now would it? During delivery my son's heart rate was dropping with every contraction. They called for an emergency c-section, and right before they were about to put me under and start the incision I had an overwhelming need to push. I had the blue paper/sheet hung up in front of me, couldn't see anything, couldn't sit up. Yes, I delivered FLAT on my back (no wonder why the injury happened huh?). All I heard was the delivering doctor yelling "MOVE THAT BABY, MOVE THAT BABY!" It's hard to say exactly what went on, on the other side of that blue paper/sheet that day. But obviously something happened that shouldn't have and could have been prevented.
He had his first PT appointment and goes back in April for a follow-up. He can use his whole arm, hands and fingers. But his hand is almost always in the fist, as it comes with the injury. He can get his arm where it needs to be to get something, but doesn't quite have the FINE motor skills to grab and hold anything.
He is 8 months old (on 02-10-11) and his left arm is the effected arm.
Your experience and progress so far.
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- Posts: 2
- Joined: Thu Feb 03, 2011 10:00 am
- Injury Description, Date, extent, surgical intervention etc: My son has a mild form of Brachial Plexus injury/Erb's Palsy. Not noticed or noticeable at birth. I discovered it on my own when he was about 4-5 months. Not word from delivering doctor that anything could have gone wrong during delivery...but then again that wouldn't get mentioned to me now would it?
He had his first PT appointment and goes back in April for a follow-up. He can use his whole arm, hands and fingers. But his hand is almost always in the fist, as it comes with the injury. He can get his arm where it needs to be to get something, but doesn't quite have the FINE motor skills to grab and hold anything.
He is 8 months old (on 02-10-11) and his left arm is the effected arm.
Re: Your experience and progress so far.
I would strongly suggest getting a second opinion. This just does not sound like a brachial plexus injury. We've seen many situations similar to what you are describing over the years, with a BPI diagnosis, that turn out not to be BPI. There are other conditions which may look exactly like a partially-healed brachial plexus injury, but none of them follow the recovery pattern that is unique to a brachial plexus injury.
It is literally IMPOSSIBLE to not notice the effects of a permanent brachial plexus injury immediately. If the injury is severe enough to leave lingering deficits, there is no way it would go unnoticed for minutes or days, never mind months. The initial presentation of a brachial plexus injury is *always* complete paralysis of the arm or hand for some period of time. Sometimes the impact on part of the arm (such as the child's hand, if the lower roots are very minimally affected) "wears off" within minutes, hours or days. But with a BPI the visible impact is always worse in the beginning, with gradual improvement over time (unless there is no recovery at all). If your son's hand issues now were caused by a brachial plexus injury from birth, the impact on his hand would have been extremely noticeable immediately. His hand would have initially been completely limp (and most likely his entire arm, as well). A child who presents symptoms months later, but had no obvious symptoms immediately after birth, simply does not have a brachial plexus injury. The nerves and any injury to them just don't work that way. A more likely diagnosis, and one that more commonly fits your son's gradual emergence of effects, is mild hemiplegic cerebral palsy. I strongly recommend a followup with an experienced neurologist.
Kate
It is literally IMPOSSIBLE to not notice the effects of a permanent brachial plexus injury immediately. If the injury is severe enough to leave lingering deficits, there is no way it would go unnoticed for minutes or days, never mind months. The initial presentation of a brachial plexus injury is *always* complete paralysis of the arm or hand for some period of time. Sometimes the impact on part of the arm (such as the child's hand, if the lower roots are very minimally affected) "wears off" within minutes, hours or days. But with a BPI the visible impact is always worse in the beginning, with gradual improvement over time (unless there is no recovery at all). If your son's hand issues now were caused by a brachial plexus injury from birth, the impact on his hand would have been extremely noticeable immediately. His hand would have initially been completely limp (and most likely his entire arm, as well). A child who presents symptoms months later, but had no obvious symptoms immediately after birth, simply does not have a brachial plexus injury. The nerves and any injury to them just don't work that way. A more likely diagnosis, and one that more commonly fits your son's gradual emergence of effects, is mild hemiplegic cerebral palsy. I strongly recommend a followup with an experienced neurologist.
Kate
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- Posts: 2
- Joined: Thu Feb 03, 2011 10:00 am
- Injury Description, Date, extent, surgical intervention etc: My son has a mild form of Brachial Plexus injury/Erb's Palsy. Not noticed or noticeable at birth. I discovered it on my own when he was about 4-5 months. Not word from delivering doctor that anything could have gone wrong during delivery...but then again that wouldn't get mentioned to me now would it?
He had his first PT appointment and goes back in April for a follow-up. He can use his whole arm, hands and fingers. But his hand is almost always in the fist, as it comes with the injury. He can get his arm where it needs to be to get something, but doesn't quite have the FINE motor skills to grab and hold anything.
He is 8 months old (on 02-10-11) and his left arm is the effected arm.
Re: Your experience and progress so far.
Wow, Thank you! That does sound a lot more like what he might have. I've added it to my "questions for the doctor" list. It almost fits him to a "T", only I noticed it would affect the right side of his body. His is the left side....is Hemiplegic cerebral palsy for the right side and another term for the left side maybe? Thank you again for your help!
Re: Your experience and progress so far.
No, "hemiplegic" just means one hemisphere of the brain is affected. Either side of the body can be affected, but in hemiplegic CP, usually just one side is affected. It is more typical that just the arm is affected, although the effect could extend to the entire side of the body. I believe it can be conclusively determined via testing, but I'm not positive on that. If you search the archives, you'll find a couple examples of stories very much like you describe, and this is what has ended up being the correct diagnosis for those kids. I also know of a number of children adopted from China who were labeled as having brachial plexus injuries, who ended up being conclusively determined to have had in-utero stroke or CP instead. I think this misdiagnosis tends happen in adoption of older kids because often the early history of their symptoms isn't available.
Kate
Kate